I'm sitting down for the first time in.... months :). Ok, not really, but sometimes it does feel like that. I finally have a few moments to update the blog, but first I have a prayer request.
As we speak, Deena is in surgery to rod her right femur and her right tibia. We knew that this day was coming, but we wanted to wait and let her get some of her PAM infusions before rodding. When we checked her right femur last, it was evident that the time had come. They rodded her right femur in India with what we believe is a generic Fassier-Duval rod. The rod may not have ever been put in correctly, and also did not deploy correctly. Because of this, the rod is positioned badly and is protruding from the bone. The bone has also curved around below where the rod has slipped up.
Deena is in surgery to remove her old rod and put in a brand-name FD rod correctly. We will also rod her fibia, which is also very curved and weak, since she will be under for her femur, and it will save her a surgery in the future. A representative from the company that manufactures the FD rod will be in her surgery as well, which is pretty cool.
Dr. Vincent is her orthopedic surgeon here in Tucson. He used to work at Shriners and has a lot of experience with kiddos with OI. He's an amazing doctor and we are thankful she is in such good hands! We also found out he lives in the neighborhood we are renting in, which is fun. It's nice to know he is so close in case of an emergency. That's been one thing that has been hard for me. In Phoenix, I always had people to call if I had an emergency and needed back-up for my other kiddos. Our rental house is close to David's work, so he is able to get home quickly if we need him, but Sundays are hard. David plays drums in the worship band at Church twice a month, but our Church changed locations and is now about 35 minutes away. If we have an emergency on a Sunday morning he plays, I'm not sure what we would do, because he can't make it back home quick enough. We love our Church, though, and the kids have made a lot of friends there, so we don't want to uproot them again. Dr. Vincent's wife said if we have an emergency, we can call them and they can be at our house in about 4 minutes. Knowing that has given me so much peace and for that I am very grateful!
Anyhow, back to surgery updates. I woke up this morning at 4 am so that we could get to the hospital at 5:30 for check-in. I'm not a huge fan of being up before the sun, but we made it! Dr. Vincent said the surgery should take about 5 hours, so for now we wait. The tricky part will be getting out her old rod, since we aren't exactly sure what is in there right now and it's positioned incorrectly. They found an anesthesiologist that let me gown up go back with her and talk to her while she fell asleep. I love getting to be there while they drift off. They said they will get me while she is waking up too, so that she wakes up to me being there. Her anesthesiologist has been wonderful so far and I will definitely be requesting her in the future.
I'll update more once they come and update me. Thanks for keeping our sweet girl in your prayers!
As we speak, Deena is in surgery to rod her right femur and her right tibia. We knew that this day was coming, but we wanted to wait and let her get some of her PAM infusions before rodding. When we checked her right femur last, it was evident that the time had come. They rodded her right femur in India with what we believe is a generic Fassier-Duval rod. The rod may not have ever been put in correctly, and also did not deploy correctly. Because of this, the rod is positioned badly and is protruding from the bone. The bone has also curved around below where the rod has slipped up.
Deena is in surgery to remove her old rod and put in a brand-name FD rod correctly. We will also rod her fibia, which is also very curved and weak, since she will be under for her femur, and it will save her a surgery in the future. A representative from the company that manufactures the FD rod will be in her surgery as well, which is pretty cool.
Dr. Vincent is her orthopedic surgeon here in Tucson. He used to work at Shriners and has a lot of experience with kiddos with OI. He's an amazing doctor and we are thankful she is in such good hands! We also found out he lives in the neighborhood we are renting in, which is fun. It's nice to know he is so close in case of an emergency. That's been one thing that has been hard for me. In Phoenix, I always had people to call if I had an emergency and needed back-up for my other kiddos. Our rental house is close to David's work, so he is able to get home quickly if we need him, but Sundays are hard. David plays drums in the worship band at Church twice a month, but our Church changed locations and is now about 35 minutes away. If we have an emergency on a Sunday morning he plays, I'm not sure what we would do, because he can't make it back home quick enough. We love our Church, though, and the kids have made a lot of friends there, so we don't want to uproot them again. Dr. Vincent's wife said if we have an emergency, we can call them and they can be at our house in about 4 minutes. Knowing that has given me so much peace and for that I am very grateful!
Anyhow, back to surgery updates. I woke up this morning at 4 am so that we could get to the hospital at 5:30 for check-in. I'm not a huge fan of being up before the sun, but we made it! Dr. Vincent said the surgery should take about 5 hours, so for now we wait. The tricky part will be getting out her old rod, since we aren't exactly sure what is in there right now and it's positioned incorrectly. They found an anesthesiologist that let me gown up go back with her and talk to her while she fell asleep. I love getting to be there while they drift off. They said they will get me while she is waking up too, so that she wakes up to me being there. Her anesthesiologist has been wonderful so far and I will definitely be requesting her in the future.
I'll update more once they come and update me. Thanks for keeping our sweet girl in your prayers!
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